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Tag: families

  • Illustration from an awareness campaign about SLC6A1 and the families affected by it

    Help us raise awareness of SLC6A1

    Do you know a person or family affected by SLC6A1? Help us make this reality more visible.

    Many families spend years on a complex journey before they understand the cause of the difficulties affecting their children or loved ones. Raising awareness of SLC6A1 can help more people recognise this reality and find sources of support.

    A growing community

    At SLC6A1-Spain we work to connect families, share accessible information and promote collaboration between patients, families and professionals. Every story that is shared can help others feel less alone.

    If there is a family affected by SLC6A1 around you, share this campaign. You can also help us by spreading this message on social media and among associations, healthcare centres and patient communities.

    We keep fighting together

    • Share this post.
    • Talk about SLC6A1 with respect and sensitivity.
    • Help families find one another.
    • Support and listen to those who live this reality.

    Awareness is a first step towards building a more connected, informed and caring community. We keep searching, supporting and fighting together.

    Image from the post “Help us raise awareness of SLC6A1”

    Sources

    See the original post on X (in Spanish)

  • Training to strengthen our children’s voice

    Two family members from our community attended the Spokesperson Training (Formación de Portavocías) organised by FEDER and AELMHU. For us, these spaces are an opportunity to learn, share experiences and strengthen families’ voices.

    During the day they worked on communication skills that are useful in different contexts, such as meetings with public authorities, conversations with journalists and awareness-raising activities. Communicating in a clear, approachable and rigorous way is important to explain the reality of people and families affected by SLC6A1-related disorders.

    A voice built together

    Representing families requires listening, preparation and the ability to convey our needs and priorities. Spokesperson training helps us take part in these spaces with greater confidence and consistency, always respecting the diversity of experiences.

    At SLC6A1-Spain we continue working to raise awareness of this rare disease, encourage collaboration and strengthen families’ participation. Everything we learn together can help us move towards clearer communication and a more aware society.

    We thank FEDER and AELMHU for organising this training and for the meeting space they provided.

    Family members linked to SLC6A1-Spain during a spokesperson training organised by FEDER and AELMHU

    Sources

    See the original post on X (in Spanish)

  • SLC6A1-Spain announcement about a lottery share and a possible prize

    Shared hope to keep moving forward

    SLC6A1-Spain announcement about a lottery share and a possible prize

    In 2024 we were especially excited to share luck for the first time through the Spanish Christmas Lottery. We want to share that joy with everyone who is part of SLC6A1-Spain and with those who support us every day.

    Beyond the celebration, every gesture of support reminds us of the importance of walking together. Families and supporters are an essential part of this community and of the strength with which we keep going.

    A year to keep hope alive

    We look to the new year hoping that research will keep advancing and help bring us closer to better answers for people with changes in SLC6A1. We do so with hope, but also with our feet on the ground and respecting the time that science needs.

    We will keep working to raise awareness of this reality, support families and encourage collaboration around the SLC6A1-related syndrome.

    Thank you for being by our side, for contributing and for helping us keep this cause alive. Every bit of support counts and encourages us to keep always fighting by your side (siempre luchando contigo).

    Sources

    See the original post on X (in Spanish)